Frontotemporal Dementia

Researchers are conducting the 100-Year Human Aging Study, an observational trial designed to follow participants over their lifespans to investigate which health measurements can predict mortality, serious diseases, and functional disability. The study aims to validate many longevity measures that currently lack prospective evidence by tracking physiological, cognitive, social, and environmental factors that change with aging. This research will generate important data to improve understanding of aging and longevity medicine. Participants undergo comprehensive multi-system clinical screenings including tests like cardiopulmonary exercise testing, body composition assessment by DEXA, echocardiography, electrocardiography, spirometry, neurocognitive testing, sensory assessments, metabolic testing, and detailed medical and social histories. The study allows for different levels of participation, from single tests to full two-visit screening batteries, and encourages repeat testing to capture health changes over time. During the study, participants receive individualized reports including investigational estimates of biological age and predicted cause of death. Researchers collect data on mortality, serious health events, chronic diseases, functional ability, and lifestyle changes through periodic follow-up over many years, potentially up to 100 years. This extensive data collection helps evaluate how well these measurements predict aging outcomes. All data are stored in raw form for future analysis and participants are supported with ongoing contact and opportunities for repeat assessments.

This research focuses on elderly patients hospitalized in Continuing and Rehabilitation Care Units (CRCU) who often suffer from neurodegenerative diseases and require personalized rehabilitation care. Many of these patients struggle with eating independently due to difficulty gripping standard cutlery, which may contribute to malnutrition. The study aims to evaluate the use of customized ergonomic cutlery handles designed with 3D printing technology to improve patients' autonomy during meals. Participants will receive cutlery handles with diameters tailored to their hand grip capacity, determined by a functional and joint assessment conducted by an occupational therapist. The handles come in sizes of 25, 30, 35, or 40 mm and are made from lightweight, thermoformable materials using 3D printing and computer-aided design. The study includes assessments at three lunch times: before using the adapted cutlery (Day 0), the first use of the adapted handles (Day 1), and after three days of use (Day 3) to observe learning and adaptation. During the study, the occupational therapist will assess the patient's autonomy in eating using the Katz scale and perform ecological assessments of meal interactions on Day 0 and Day 3 to observe compensatory movements. A dietician will measure the amount of food ingested at each lunch. The patient’s participation concludes after the Day 3 assessments, with outcomes focused on changes in food autonomy and upper limb compensation during eating.

Researchers are investigating the effects of deep brain stimulation (DBS) on brain function in patients with various neurological and psychiatric disorders, including Parkinson's disease, essential tremor, dystonia, depression, epilepsy, neuropathic pain, and Alzheimer's disease. This prospective cohort study aims to use advanced MRI techniques, particularly functional MRI (fMRI), to better understand how DBS influences brain circuits and to explore whether fMRI can aid clinical practice in managing DBS therapy. Participants in this study include patients who will undergo or have already undergone DBS electrode placement. The study involves performing structural MRI scans using 1.5 Tesla or 3 Tesla machines as well as resting state and task-based fMRI scans. DBS patients will be scanned while their devices are programmed at different stimulation settings, including switched off and switched on states. The fMRI results will be shared with clinicians to help guide DBS programming decisions. During the study, participants will have multiple brain scans from three months before DBS implantation to one year after. Researchers will assess brain areas activated by DBS, examine structural and functional brain connectivity through MRI, and monitor clinical outcomes. The study includes regular evaluations to observe how DBS impacts brain function over time, aiming to improve post-operative follow-up and optimize treatment for these patients.

Cognitive impairment related to dementia is often missed in primary care, especially among older adults from minority and socio-economically disadvantaged populations. Researchers are evaluating the 5-Cog brief cognitive assessment, a quick, simple, and standardized tool that takes less than 5 minutes and addresses cultural and logistical barriers. This pragmatic cluster-randomized trial aims to test whether the 5-Cog paradigm improves detection of new cases of cognitive impairment and dementia care in older adults with cognitive concerns. The study involves 22 primary care clinics in Bronx and Indiana, enrolling about 6,600 patients aged 65 and older who report cognitive concerns. Participants receive either the 5-Cog battery combined with a clinical decision-making tool or enhanced usual care, which includes cognitive concern screening. The 5-Cog battery includes tests like Picture Memory Impairment Screen, Motoric Cognitive Risk Syndrome diagnosis, and Symbol Match. Primary care physicians receive results and decision support but use their clinical judgment in care decisions. Participants undergo cognitive concern screening before their appointments. Researchers will review new cognitive impairment diagnoses and improvements in dementia care within 90 days after the primary care visit using electronic medical records. Additional evaluations include tests for reversible causes, medication changes, specialist referrals, and social support. The study also examines the 5-Cog paradigm's implementation and cost-effectiveness, focusing on populations facing health disparities. Total participation duration varies by patient and clinic schedule.

Researchers are evaluating a new imaging method to detect the accumulation of a protein called TDP-43, which is linked to rare brain diseases like frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS). The study aims to see if the new PET tracer, called [18F]ACI-19626, is safe when injected and if it can reliably show abnormal TDP-43 in the brain. The study includes both healthy people and those suspected of having TDP-43 protein buildup to compare differences. The study involves up to 45 participants split into groups: healthy controls, symptomatic gene mutation carriers with FTD, and patients with other TDP-43 related diseases. Participants receive an intravenous injection of [18F]ACI-19626 followed by a PET scan to track the tracer's brain uptake. Some participants may have a second PET scan within a month to check if the results are consistent. The study lasts up to 3 months, including screening, scanning, and follow-up. During the study, participants will undergo physical and neurological exams, questionnaires, blood and urine tests, ECGs, and sometimes MRI scans to confirm eligibility and health status. After the PET scan, blood samples are taken, and participants receive a phone call 2 to 4 days later to monitor any side effects. The main measurements include safety assessments, brain uptake of the tracer, and how well the scans can quantify TDP-43. The study also evaluates radiation exposure and tracer consistency between scans.

Researchers are evaluating the use of [18F]NIDF PET imaging to visualize abnormal tau protein pathology in the brains of living humans. This technique targets tau neurofibrillary tangles, which are linked to neurodegenerative diseases such as Alzheimer's and other tauopathies. The study focuses on assessing the safety and diagnostic effectiveness of this imaging agent, which may offer advantages over existing tau PET tracers due to its stronger binding and lower off-target effects. Participants will receive a single intravenous injection of approximately 10 b1 3 mCi of [18F]NIDF. Following the injection, a PET/CT scan will be performed to capture images showing the distribution of the tracer in the brain. The study includes both healthy volunteers and patients with cognitive impairment or probable Alzheimer's disease. There is only one main study period involving this single injection and imaging session. During the study, participants will be monitored for safety from the time of injection up to seven days afterward. The primary assessments include safety evaluation and measuring how the tracer spreads in the body during the PET/CT scan on the injection day. Researchers will also evaluate the diagnostic performance of the imaging over a two-week period from enrollment to the end of imaging. Participants' involvement is limited to the injection, scanning, and follow-up safety checks.

Researchers are exploring how a digital life story application can support person-centred care for older adults with dementia. The study focuses on healthcare professionals' perspectives and aims to see if the digital application can replace traditional written life story documents used in care. The life story tool is intended to help create security and improve communication between healthcare professionals and people with dementia by sharing important personal information and experiences. The study involves healthcare professionals who currently use a written life story in their daily care routines. They will participate in focus group interviews to share their experiences, then transfer information from the written life story to the digital application called Min Memoria. This digital tool will be tested in daily care settings, and researchers will observe how it is used during interactions and communication with older adults with dementia. Participants will be involved over several periods: from October 2023 to August 2024, researchers will collect experiences of using the written life story; from September 2024 to August 2025, usage data of the digital tool will be gathered; and from September 2025 to December 2026, observations will be made on how the digital life story is used in care situations. The study will monitor these experiences and interactions to evaluate the potential benefits and application of the digital life story tool.

Researchers are evaluating a low-cost augmented reality platform for balance training in patients with balance disorders caused by degenerative injuries or cerebrovascular diseases. The study aims to determine if the system is usable, acceptable, safe, and if it improves balance. The trial is a usability study conducted by the Hospital Universitari Vall d'Hebron Research Institute. The intervention has two phases: the first phase lasts four weeks with supervised balance training sessions at the hospital, conducted for 60 minutes, three times a week. If patients meet inclusion criteria, the intervention continues for two additional weeks at home with a family member trained to assist as a training partner. The platform uses different exercise protocols accessed through RGSweb, including balance and sit-to-stand exercises with visual targets and movement tracking. Participants undergo three assessments: before treatment (Day 0), after the hospital phase (Week 4), and after the home phase (Week 6). Evaluations include usability scales, adherence measures, balance tests like the Berg Balance Scale, postural sway, sit-to-stand tests, balance confidence, and quality of life questionnaires. Safety is monitored throughout, and adherence is tracked during both hospital and home interventions.

Researchers are investigating how transcranial direct current stimulation (tDCS), a non-invasive brain stimulation technique, affects working memory in older adults with mild cognitive impairment (MCI) compared to cognitively healthy older adults. This mechanistic study aims to understand the brain and cognitive function changes caused by a single session of tDCS. The study uses advanced brain imaging and machine learning to analyze the effects of stimulation on brain structure and working memory performance during specific tasks. Participants will receive either active or sham tDCS using a neuroConn MR-safe device that delivers 2.0 mA current through electrodes placed on the scalp over frontal brain regions. Active stimulation lasts 12 minutes with gradual ramp-up and ramp-down, while sham stimulation mimics the sensation but only delivers current for 30 seconds. Each participant completes three runs of an N-back working memory task before, during, and after stimulation. The study uses a randomized, double-blind, crossover design with at least two weeks between sessions. Throughout the study, participants undergo cognitive testing and brain MRI scans to measure working memory accuracy and brain connectivity changes. The main outcome is working memory performance on the 2-back task comparing active versus sham stimulation. Researchers will also monitor safety and participant ability to perform the tasks and tolerate stimulation. The total participation period includes multiple sessions spaced to allow for washout and evaluation of stimulation effects, with the study concluding by late 2029.

Researchers are investigating the effects of a multidomain lifestyle intervention to slow cognitive decline and dementia risk in elderly residents aged 60 to 80 in Zhejiang Province, China. The study builds on findings from Finland, where a similar approach combining physical activity, nutrition, cognitive training, social activities, and vascular risk management showed promise in healthy older adults at risk of cognitive decline. This trial aims to explore how such an intervention may change brain structure and function as well as cognitive abilities in an Asian population. Participants are randomly assigned to either a structured multidomain intervention group or a self-guided control group. The intervention group receives tailored nutritional guidance, cognitive training, physical exercises, and vascular risk monitoring, all adapted to Chinese cultural norms. The control group receives regular health education campaigns and basic health monitoring every 6 to 12 months. This trial runs for two years with ongoing assessments to evaluate the impact of these lifestyle changes. During the study, participants undergo various evaluations including cognitive tests measuring global and domain-specific cognition, neuroimaging scans like MRI and fMRI, laboratory blood tests, and physical performance measures such as grip strength and gait speed. Questionnaires assess quality of life, depression, sleep quality, and daily activities. Researchers also monitor cardiovascular health, dementia onset, and falls. This comprehensive monitoring will help determine the intervention's effects on brain health and daily functioning over the 24-month period.